DCIS: Making lifesytle changes but feel I should do more.

Are you doing anti-estrogen medication?

Hi @pfitzp
If you want to pay out of pocket for genetic testing, my breast oncologist advised using
https://www.color.com/individuals-genomics
for my son to have testing due to my BRCA2 mutation. He did their testing 5 years ago and has both the BRCA2 and CHEK2 mutations I have. I did the testing with him since they tested for mutations I hadn't been tested for. That is how I found out I also have the CHEK2 mutation. They also test for enzymes needed to metabolize meds and other stuff.

It's just a saliva test. They send you the kit and you send it back with your saliva. Easy.

Color's Hereditary Cancer Test analyzes 30 genes relevant for mutations that can increase your patient's risk for common hereditary cancers, including breast, colorectal, melanoma, ovarian, and other cancers.

It's currently $250 US plus shipping and handling. The results could let you know if you need to do more or could give you peace of mind if you don't have any of the cancer mutations. They'll send you your results and review them with you. One of their doctors can order the test for you if you check that box when ordering.

I agree with @windyshores about checking into anti-estrogen meds. That can reduce your chance of recurrence by 50%. Best of luck to you.

I have my first follow up consultation this week so will ask. Thanks so much for your reply.

Thank you so much for that, I will definitely do this test, much appreciated.

Did you have an Oncotype test? That is a genomic test. The genetic tests are for BRCA2 and others. The Oncotype tells you recurrence risk with and without hormonal meds and whether chemo is of benefit. Perhaps your doc didn't do an Oncotype but there is one for DCIS.

I was diagnosed with DCIS (Stage 0) two months ago. I had a lumpectomy a week ago; margins were clear, and no lymph node was involved. I am debating about radiation therapy and anti-estrogen therapy. When deciding to go against the advice of the tumor board, how does this impact your insurance coverage and coverage under sick leave or FMLA? The nasty side effects of these treatments cause me to have insomnia thinking about my available treatment. Has anyone opted to do no treatment, and if so, what was the regimen of choice, and how are you doing thus far? Only after the lumpectomy it all sunk in, and I am mentally experiencing emotions I never experienced during the initial diagnosis. its a lot to take in.

I don't think a tumor board communicates directly with insurance. However, all I know about personally is Medicare. I repeatedly did not do what tumor board suggested--chemo and 6 weeks of radiation--and there have been no problems. You might ask you insurance agent or if you are in large organization whatever office handles insurance just to check. Try not to worry too much about side effects. Anti-estrogen is simple to stop--no problem quitting it although oncologist might object. I've been on an AI since December with barely any noticeable effects--a few mild hot flashes. Radiation is trickier, but ask your radiation oncologist about the minimal number that would be useful. You can also turn down the "boost" treatments at the end--I did. It really is up to you, and a middle-of-the-road approach can yield fine results. there is fear & anxiety inherent in cancer but yours is very treatable. There are no perfect choices. It helped me a lot to run my decisions past my support group of best friend, daughter, and husband...so maybe check in with someone you trust? All best to you.

I know several women that had lumpectomy and radiation afterwards. No problems and my mother-in-law was one of these. Her surgery and radiation was at 70 years old. She took tamoxifen for 2 years, then said no more. She lived to 94.
I had a bi-lateral because I had had radiation for a different cancer 25 years ago. I feel the radiation just kind of seals off any remaining cells. Just my opinion. Taking Letrozole, a few side effects, nothing major.

I took letrozole, no problems (except some bone loss, but only because I could not take bone meds). I think most posts on forums tend to the negative when many people don't have bad side effects.

Maybe you could ask about radiation though. I read an article yesterday that cancer care is moving away from radiation.

Dear Butterflyeffect777, I have similar case, I declined radiation treatment, took Tamoxifen 5mg for about 2 month. Then I stopped it because of bad side effects. I did MRI after 6 months surgery, and will have MRI another one in 6 months. I choose to change my life style, I applied FMLA too, but I decided to have my retirement to decrease stress, I exercises daily, and have healthy diets. etc. I also experienced insomnia, I am taking Melatonin and it helps. Wish you the best.